A woman’s risk of breast cancer approximately doubles if she has a first-degree relative (mother, sister, daughter) who has been diagnosed with breast cancer. About 15% of women who get breast cancer have a family member diagnosed with it.
– From http://www.breastcancer.org/symptoms/understand_bc/statistics
As I mentioned in yesterday’s post, I asked my sister Alyssa if she would also contribute a post for this blog, which she sent to me last night. A few things need to be said before we get to my sister’s post. Alyssa and I are the two youngest of 5 kids. While all of us “kids” are within 2 years of one another, she and I have a different relationship with one another than we do with our other siblings.
We talk or at least text every day. When one of our husband’s is out of town, we are the other’s “safety buddy.” We will tell each other when we’re going somewhere, when we get home, when we’re going to bed or wake up, and remind the other to lock the doors and windows. Until I got married, Alyssa was the focal point of my love and the highlight of my days. I told her everything, and possibly WAY TOO MUCH at times (especially on weekends after 2 a.m.) any time I got a chance to talk with her. She was busy with her husband and young family, but she always made time for me then – just like she does now.
Alyssa has been a stay at home mom since her first born made his debut 12 years ago, and she’s damn amazing at it. She cooks, cleans, chauffeurs, manages schedules and homework and still has a laugh every day. She is so sweet to her husband and kids, but that’s just her nature. She is loved, needed and relied upon in her immediate and extended families. She’s also secretly a devil, and I mean this in the nicest way possible. She is sweet, shy, reserved until you mess with her family; then she will scratch your eyes out and possibly break a glass vase over your head (totally a fictional scenario…).
I bring these things up because my Alyssa is someone else’s wife, sister, mother, cousin or best friend. And while some people have recently said that having the entire month of October for Breast Cancer Awareness is too much, I disagree. If not for Alyssa’s cancer, I probably wouldn’t have discovered my own genetic mutation and developed breast cancer myself. I can’t help but assume there are so many other families out there with a genetic risk that just isn’t thought of or accounted for. All of us kids knew that my mom had a hysterectomy at a very young age because she was “riddled with tumors”, but it never occurred to us that this equated to an inherited risk for cancer. So, please, let’s continue raising awareness, having discussions, and hopefully working towards a cure.
And now, after too much from me, here is my Alyssa:
I am a 34 year old married, mother of three and am a breast cancer survivor that carries the BRCA 1 gene. I was diagnosed with Stage 1 breast cancer in February 2010 at the age of 30. I found the lump in my breast by chance of all things. I hopped into bed on a cold night in January with my bra on, and the underwire in my bra pressed on the lump in my breast. I did not know that within one month of finding that lump, my life would be changed forever.
Everything happened so fast after I was diagnosed with breast cancer. I was diagnosed with Stage 1 breast cancer, and my cancer was aggressive so my doctors wanted to move fast. All of the doctors I saw, from my nurse practitioner who ordered the ultrasound of my breast, to the radiologist who biopsied my breast, to the first oncologist I met with, were shocked that I had breast cancer. They were shocked because of my age and the family history I gave them, which was little. At the time I only knew of my aunt on my dad’s side having breast cancer, but not the details of her cancer. I knew my mom had a hysterectomy in her late twenties, but it was never clearly explained to me why. My doctors had not had a patient my age with so little occurrence of breast cancer in the family. After meeting with the first oncologist my husband and I were bombarded with information. There seemed to be multiple scenarios, with multiple treatments. None of the doctors were 100% certain of the best route for treatment, because the doctors did not know why I had breast cancer. It was recommended I meet with a genetic specialist.
Meeting with my genetic counselor was one of the best things I could have done. After talking with her, and discussing all the information she could give me, I chose to have the genetic testing. During our meetings I discovered more about my family’s history of cancer, that I was a BRCA 1 carrier, that there is a 50% chance my son and two daughters may be carriers, & there was a 50% chance any of my three sisters could be a carrier. It was discovered my younger sister is also a BRCA 1 carrier. We are the 50% out of the four sisters in my family that carry the mutation. Shera chose to have the DIEP breast reconstruction to reduce her chances of breast cancer. If you are reading this, then you already know of my amazing sister.
With my diagnoses of breast cancer and carrying the BRCA 1 gene I decided that I wanted to reduce my risks of recurrence and elected to have a bilateral mastectomy with reconstruction at a later time, and a total hysterectomy. For me, this was the best choice. I was not hesitant about these choices. I knew I wanted to have my bilateral mastectomy first. I knew I did not want to have my reconstruction done at the time of my mastectomy. I thought implants were the route I would take, but I did not want to deal with the multiple visits to the surgeon’s office while going through chemotherapy and a total hysterectomy.
When I was done with chemo and recovered from my hysterectomy I went to see a plastic surgeon about my reconstruction. He went into great length of the reconstruction process, my expectations, and answered all my questions. After he left the room I had photos taken of my chest, and scheduled my appointment for pre surgery for breast implants. I thought this was the next step in the plan I had made many months before. This was what was supposed to happen next. So I couldn’t figure out why I felt so sad. Was it because my breasts wouldn’t be as big as I thought they would be? I always wanted to be a C cup if I had implants, and when I was told I did not have the skin for that size after my mastectomy I thought to myself, “Well, why the hell am I doing this?” Or was I sad because after looking at the photos of reconstructed breasts using implants, the breasts looked odd to me. Or was it the reason I knew, but didn’t want to admit.
When I arrived home I talked to my husband about my visit, and when I was finished talking my husband asked, “If this is what you want to do, why are you so sad?” I told him I no longer felt like I wanted to do the reconstruction, but I felt I had to. I felt it was the expectations of everyone else. I read multiple articles, and talked to multiple doctors and reconstruction was always hand in hand with mastectomies. Whether it was at the time of the mastectomy or further down the road. But after my consultation, I realized that the outcome of reconstruction was not going to be what I had envisioned. So did I really want to go through all of that to only be disappointed in the end? I also felt strongly that I did not WANT to have this surgery. I just didn’t want it. I wanted my body to be left alone. In the end I decided not to have reconstruction.
I decided the next best thing would be breast prosthetics. I went to my designated prosthetics company and was fitted for the size of prosthetics I wanted. I figured I would wear my prosthetics during the day, and remove them at night. That only lasted a few weeks. It felt odd having breasts in the way again after not having breasts for almost a year. I enjoyed not wearing a bra, and not having to worry about breasts without a bra on. I occasionally wear my prosthetics, but I’ve worn them probably twice in the past two years.
I’ve gone through ups and downs with the decision of not having reconstruction after my mastectomy. My downs are due to a handful of reasons. I was worried if my husband would still find me attractive without breasts. Would my kids be teased at school for their mom looking different? Will I figure out how to wear women’s clothing and have it still look cute, and not droop in the front where breasts are supposed to fill that area? I find comfort and confidence in the answers I’ve received to these questions. My husband still calls me his beautiful wife, my kids tell their friends, classmates, & whoever asks that their mom had breast cancer, and I can still rock an outfit that I feel makes me look cute!
I am still self conscious at times of my choice, but it’s my choice. Maybe one day I will change my mind. Maybe I will never change my mind. I know no matter what I choose I will always have the support of my husband, my kids, my sister who’s been through her own journey and continues on it, my other two sisters who support us, my family, and my friends.
I’ve attached photos of my scars so you are able to see what my scars looks like almost 4 years after my bilateral mastectomy.
I hope this helps!
~Alyssa
Alyssa after mastectomy
Alyssa photo 2
Alyssa mastectomy photo 3
Alyssa mastectomy photo 4
Alyssa and John visiting us in Seattle this summer.
There are no words for how much I love my sister. Every time this song comes on, I think of her.
I (obviously) failed at my attempt to be clever for this blog title, but it does a good job about conveying the subject matter of this post.
Since joining the DIEP support group on Facebook, I have received a few personal messages asking about things I kind of covered here previously that deserve a little more discussion. I received a couple of direct messages inquiring what my husband thought about my process and, more specifically, my Noobs. I’ve been asked this a couple of times and have, somewhat ignorantly, answered for Mike (my husband, who also has a blog). I’ve said, “He was great about the whole thing. He was supportive of my decision to do the BPM and go forward with the DIEP reconstruction. He helped care for me during my recovery and was terrific the whole way through.”
But, after receiving another message asking the same last night and responding the same, I received this question in reply:
“But how does he think you look?”
In all honesty, my husband (fortunately) tells me very frequently that he thinks I look great. And, to continue on the path of honesty, I sometimes feel like he says it to help buoy my spirits and keep my confidence up. And not have me scratch his eyes out. But I think the criticisms Mike might have about my body have nothing to do with my surgeries. I think the real adjustment came when we had twins and the aftermath of me gaining (and then losing) 70 lbs. I have assumed, over these past 18 months, that he sees my post-op, nude body the same way that I see it; in the dark and somewhat intoxicated. JUST KIDDING. I asked Mike to contribute a post to my little blog and give some spousal, but also community, perspective for those wondering the same. Without any further adieu, I give you my husband…but only for the period of time it takes you to read his post:
My wife Shera asked me to explain how I see/view her body/breasts/scars after surgery. Here are my unfiltered/unedited thoughts:
Shera spent an enormous amount of time researching her reconstruction options. She formulate a game plan that she was comfortable with and worked well for her. She was fortunate to have supportive and very skilled doctors.
Mike and me in 2007 (when our only babies were felines).
Dreamy, right?
*Also, since October is Breast Cancer Awareness month, I wanted to have a post from a survivor with a different perspective on reconstruction. My sister, Alyssa, is going to put together a small (but fantastic, I’m sure!) post about her process and why she chose not to have reconstruction. Stay tuned for that, hopefully later this week.
And now, the song that I chose for mine and Mike’s walk down the aisle…
This is the best “Get a fucking clue, it’s FEDERAL LAW that you provide coverage” response EVERRRRRRRRRR!
other than calling me (temporarily) deformed, this is pretty much amazing – and the best fuck you to an insurance company ever.
I cut and pasted this article from NPR. It doesn’t have anything to do with BRCA1, BRCA2, prophylactic mastectomies or DIEP flap reconstruction. But I thought it relevant and a good thing to repost. When my sister was diagnosed, she was 31. She’d never had a mammogram or breast MRI. She had stage 1 breast cancer, but her form of breast cancer was fast growing. We are all lucky that she just happened to roll over and feel that awkward, uncomfortable lump one night and decided to have it looked at. That lump changed all of our lives, but mostly hers. To my sister, Alyssa, I LOVE YOU and I am so proud of your ability and willingness to fight!:
My sister, Alyssa, with one of my daughters (Liv)
Women should get screened for breast cancer in their 40s, a study concludes, because they face a greater risk of death when cancers aren’t found early.
Women who were diagnosed with cancer in their 40s and died of the disease were more likely to have never had a mammogram than were older women, according to the study.
Seventy percent of the women diagnosed with cancer in their 40s who later died hadn’t had a mammogram, compared to 50 percent of women in their 60s. Half of the cancer deaths in the study were in women who had been diagnosed before age 50.
“Breast cancer is primarily a disease of older women, but younger women tend to have faster-growing cancer,” says , a professor of women’s health and radiology at the Washington University School of Medicine in St. Louis. She wasn’t involved in the study.
“There are people who feel that screening doesn’t reduce death rates, that it’s all in treatment,” Monsees tells Shots. “This study corroborates prior studies that screening mammograms save lives.”
Breast cancer is in younger women, and is most often diagnosed when women are over 60. But in this study, the death rate for women diagnosed in their 40s was almost twice that of women diagnosed in their 70s.
The study is sure to add to the ongoing controversy over when and how often women should get mammograms. It backs up the American Cancer Society’s that women get mammograms every year starting at age 40.
But in 2009, the U.S. Preventive Services Task Force, a federally funded independent panel, that, in general, women should wait until age 50 to start getting screening mammograms, and then get screened every two years up till age 75.
That recommendation factored in the fact that younger women are more likely to have false positive mammograms, which can lead to unnecessary biopsies and anxiety.
“Overdiagnosis has been completely exaggerated,” says , director of breast imaging at Massachusetts General Hospital and an author of the paper. “Well, calling people back for additional screening causes anxiety, I understand that. But it absolutely saves lives. You reduce the death rate by 30, 40 percent if you start screening at age 40.”
This study looked at women in the Partners HealthCare system in Boston who were diagnosed with invasive breast cancer from 1990 to 1999. The researchers then checked the women’s medical records to see if and when they’d had mammograms.
It’s a form of study called a “failure analysis,” a what-went-wrong approach similar to that used in investigating airplane crashes. , an emeritus professor at Brown University’s Alpert Medical School and one of the study authors, tells Shots that he thinks it better reflects the effect of screening than do population-based studies, because the health system records show which women actually got mammograms, rather than say they did.
Of the 7,301 women in the study, 609 had died of breast cancer by 2007. Almost three-quarters of the women who died hadn’t had a mammogram in the two years before the cancer was found.
Overall, 80 percent of the women were getting mammograms at least every two years, well above the . Some of them still got breast cancer, but, overall, the death rates were higher in women whose tumors weren’t found until they could be felt.
“While the analysis reveals that regular screening will not prevent all breast cancer deaths,” Robert Smith, director of screening for the American Cancer Society, told Shots in an email. “It also reveals that even with improvements in treatment there is still a significant advantage of detecting breast cancer with mammography before symptoms develop.”
This new study also found no benefit in mammograms for women over age 69 when it came to reducing cancer death risk.
The study was online in the journal Cancer.
A few days ago I received a comment from Gina on one of my posts saying that she read about my blog on a Facebook group dedicated to the DIEP flap reconstruction process. Upon reading this, I IMMEDIATELY looked for the page on Facebook and found it. And WHAT A GREAT RESOURCE! There are women in so many stages, some still doing research and others (like me) at the end of the journey. If you are looking for additional resources, support, a sisterhood of reconstructed boobs – join us!
https://www.facebook.com/groups/diepsupport/
You have to request to join the group and then be given permissions by an administrator, but I was in and scouring posts within an hour. This group is amazing and I’m so proud of us all taking care of and looking out for each other.
I’ve inserted a slideshow with all of my progress photos from pre-op through the present. I thought this would be a quick, helpful visual tool for everyone to see what’s in store, without having to read through everything I’ve written here (because it’s tedious to read an entire blog just for a peek).
So, if you’ve been following along, there’s nothing new in this slideshow. And if you’re squeamish (but reading this blog for some strange reason), don’t open the slideshow!
I can’t believe it’s been so long since I’ve posted an update on my blog. Blame it all on the fact that we had an actual, hot, go-swim-in-the-lake summer during regular summer months! It was crazy good! And, as I post this, the rain is coming down, down, down. It was a great run, and we had a very fun-centered summer.
I haven’t had a chance to go back and see Dr. Louie because it’s hard with the girls’ schedule, limited child care options, and everything else that happens during summer (mostly weddings, travel, weddings, swimming, weddings, travel). But this summer I did get back into my bikini after taking last summer in mostly my 1-piece to let my abdominal scar “settle” down. I can’t say that my abdominal scar is any less noticeable, but nothing is less noticeable when you are wearing a bikini. But I have the strategic advantage of things like stretch marks and cellulite to draw an observer’s eye away from my abdominal scar and closer to the train wreck that is a post-twins-pregnancy body (which I am still learning to love).
I bought a couple of suits from Athleta because they all have a UPF rating of 50. I chose UPF suits this summer because I have tattoos (other than my areolar ones) that faded due to sun exposure, and I wanted to minimize the fading of my areolar tattoos. Even with a UPF swimsuit and a coat of sunscreen under my tops, my tattoos still faded quite a bit. I will post a picture sans-bikini top at the end of this blog entry for those of you who want to see the fading, and also so that those whom do not can take cover.
Even with some fading, my areolar tattoos still look good and pretty convincing. They’ve given me more confidence about my body/surgery when the kids and I are getting changed and/or showered in the YMCA locker room after swimming. I didn’t think having (or not having) nipples after my reconstruction mattered, especially after being so happy with my initial results. But, now that I have reconstructed nipples and the tattoos, I love my result that much more. I will schedule a follow up with Dr. Louie this fall and see what he has to say. I don’t know if I’ll take another crack at the tattoos this fall, or just leave it be. I’m happy with them as they are.
Something as unexpected as a timely Seattle summer happened as well. I have been contacted so much more frequently through my blog “post-Angelina”. I’m unsure if it is because my blog has been out there a while and (kind of) easy to find, or if that many more women are truly considering a prophylactic mastectomy after she came forward. Regardless of the “why”, I am so happy that this blog is a resource for other women. Really, it is all that I wanted it to be when I decided to write about my process. I just wanted to offer some solace, perspective, and PICTURES of what all of this looks like.
Speaking of emails received, I also received a few, very surprising emails these past months. Granted, I know that not everyone responds to photos of reconstructed breasts very well, but I did receive notification of a blog comment that read something along the lines of “$@(&# pervert! Why the #()*&@ are you posting titty pictures on here where there are children who can read? Show your )#*)! face you PERVERT!” I deleted the comment and TOTALLY RESTRAINED myself from sending an (in)appropriate response, but I was surprised on many levels. But “thank you” for calling them “titties” instead of “frankenboobies”. However, I’m certain the author of that particular comment isn’t clever enough to come up with something as cool as “frankenboobies”.
Back to me! I post pictures for my sisterhood of the reconstructed boobs. I wanted to know what my results would look like, and I figured that plenty of other women want to know what potential surgical results could look like for them as well. I don’t have many pictures of my face because THIS IS NOT A BLOG ABOUT FACIAL RECONSTRUCTION, FOOL! Very few people holding a (very) personal interest in my particular subject matter could give a shit about what my face looks like. So, take that rude blog commenter, I guess. My blog is about my bilateral, prophylactic, skin sparing mastectomy and the subsequent DIEP flap breast reconstruction. It is NOT about pictures of my face or any kind of perversions. Those are TOTALLY DIFFERENT URLs!
So, here we go. On with it those of you disinterested in the bikini-free pics.
3…
2…
1…
with some fading
Angelina Jolie, BRCA, and Prevention
While lying in bed last night at about 11 p.m., I was thumbing through the NY Times trying to find something to read until I was sleepy. Instead, I found something that had me wide awake and thankful.
As the world probably already knows, the siren Angelina Jolie publicly announced her prophylactic mastectomy and reconstruction. She is BRCA1 positive. I commend her for putting herself out there as the well known, stunning face of this proactive decision. While I blogged about my process and progress, I don’t have a fraction of the draw or attention that comes with being the smoking hot Angelina Jolie. So, in case there are any of you women out there hemming and hawing about whether or not you’ll still feel and be viewed as sexy after this series of procedures – you will be.
Don’t you want to be as smart, sexy, revered, HEALTHY, ALIVE and PRESENT FOR YOUR LOVED ONES as she is?
1 year
It’s been one year since my initial surgery date. On March 15, 2012 I had a prophylactic bilateral skin-sparing mastectomy immediately followed by DIEP Flap breast reconstruction. We’ve come a long way baby.
Occasionally I will go back to the first postings of my blog. It brings me right back to how afraid I was of the unknown. I didn’t know how I would handle such a major surgery, never having been through surgery, or how my children would react to seeing me in pain through my recovery. I was worried that my tissue transfer would fail and that my reconstructed breasts (or later, my reconstructed nipples) would become necrotic. I was worried that my range of motion would forever be impacted, and I didn’t know what my body would be like after surgery. I was worried about the aesthetics. Would reconstructed breasts look freakish? Would I still feel feminine, would they feel at all like breasts? And, my biggest fear, was that this would all be for naught and that my breast tissue would come back as cancerous from the lab after my mastectomy.
What I wish now, as I’m sure many people do, is that I could go back to myself a year ago and simply say, “Calm down; shut up; sleep.” But I know it’s so much easier to say that now. I’m a year out, healthy, cancer free, and with a great surgical result. I had 1 small hematoma post-op, barely a blip on the complication register. I received clean pathology results within 48 hours of my mastectomy. My children were well looked after, taken care of (and wildly entertained) while I recovered. My body recovered well, and I am back doing the same things (and some things even beyond) I was doing before my surgeries.
I am breast cancer free, and I am thankful.
Thank you to my family and friends for your love, support, time, home cooked meals, get well cards, visits, and a little bit more love.
Thank you to my sister, Alyssa, for showing me what strong really looks like, and how easy it is to be a beautiful, feminine woman after cancer and a mastectomy.
Thank you to Dr. Sarah Javid and Dr. Otway Louie, my wonderful surgeons, who did such skilled, careful work on this body of mine.
Thank you to Dr. Daniel Z. Liu for reading my crazy ass, terrified blog posts about my post-op worries and answering me so quickly, during crazy people hours, on Twitter – of all places!
Thank you to every nurse that looked after me in recovery and took such good care of me.
Thank you to Eunice for answering my 8 million “Is this necrotic tissue?!?” texts!
Thank you to every physician and medical researcher that endures so many hours of un-fun, book heavy, sleepless nights learning about medicine, prevention, and treatment for all of us – and giving me the chance to take preventive action.
Thank you for another day.
UPDATE PHOTOS BELOW
Update photo taken 03/02/2013
R side after 2nd areolar tattoo
L Side after second areolar tattoo
It’s a week later+, and I’m finally posting an update photo of my areolar tattoos from our second crack at these. 48 hours post 2nd round tattooing, the pigment was holding strong. A week later…eh. I can’t add a new photo right now because I’m in the midst of cleaning up a dinner mess and somewhat minding our girls, but the pigment in my tattoos has come out a little here and there, but in bigger and more sizeable spots closer to thicker areas of my nipple reconstruction scars. It doesn’t look like my skin is completely rejecting the pigment like last time, but there will definitely be areas that call for a touch up.
48 hours after our 2nd attempt at areolar tattoos
I’m still keeping my nipples covered in Radia Gel and bandagedsince the smallest amount of friction is all my skin needs to bleed a little bit, then scab and spit out some more pigment. But I’m remaining hopeful that we’ll not have to start all over again. If the outcome to this round of tattooing is more like the first round, I have to say I’m disinclined to give the tattooing a third try. I’d be happy to say “we tried” and just move on. It’s not like I’m entering wet t-shirt contests or posting topless photos of myself everywhere. Well… 🙂
So I just wanted to update the photo batch and let you know how things were looking. I’ll wait until I’m at the 2 week mark and then add another update photo. So far, I give the second round of tattooing a B+. Let’s hope that it remains a passing grade!
Thought this song was fitting given my usual, mostly nude photos and living in Seattle.
shutupaboutit 